Top Banner
1 DC 1/27/2020 DIVISION OF MEDICAL ETHICS HIGH SCHOOL BIOETHICS PROJECT Sex Selection, Genetic Analysis, and Designer Babies Project Overview Assisted reproductive technologies afford prospective parents the ability to select their child’s sex and to determine whether their prospective child will inherit a particular disease or be born with a disability. Although current technology allows only for the selection of embryos that have such traits, parents may soon be able to engineer their child’s genome so that he or she has certain desirable traits, like better immunity to disease or higher intelligence. There are many ethical discussions surrounding where to draw the line when it comes to selecting for traits and, in the near future, engineering the genome itself. Should parents be allowed to select the sex of their child? What about selecting against hereditary disease? What implications would genome engineering have on society? This module will review ethical debates about the use of biomedical technologies to “design” babies, giving students the tools that they need to have an informed discussion, respectfully deliberate with their peers, and form their own opinions on the matter. Contents 1. Introduction to Topic 2. Definition of Terms 3. Selecting vs. Designing 4. Ethical Debate DC-9/20/2022
21

Sex Selection, Genetic Analysis, and Designer Babies

Jan 14, 2023

Download

Documents

Sophie Gallet
Welcome message from author
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
NYU Grossman Medical Ethics Sex Selection Genetic Analysis Sex Selection, Genetic Analysis, and Designer Babies
Project Overview Assisted reproductive technologies afford prospective parents the ability to select their child’s sex and to determine whether their prospective child will inherit a particular disease or be born with a disability. Although current technology allows only for the selection of embryos that have such traits, parents may soon be able to engineer their child’s genome so that he or she has certain desirable traits, like better immunity to disease or higher intelligence. There are many ethical discussions surrounding where to draw the line when it comes to selecting for traits and, in the near future, engineering the genome itself. Should parents be allowed to select the sex of their child? What about selecting against hereditary disease? What implications would genome engineering have on society? This module will review ethical debates about the use of biomedical technologies to “design” babies, giving students the tools that they need to have an informed discussion, respectfully deliberate with their peers, and form their own opinions on the matter.
Contents
1. Introduction to Topic 2. Definition of Terms 3. Selecting vs. Designing 4. Ethical Debate
DC-9/20/2022
6. Conclusion 7. References
1. Learn basic scientific facts about reproductive technologies available to prospective parents and about technologies. currently being developed
2. Understand and assess the main arguments for and against selecting embryos on the basis of particular traits, including sex and disability
3. Understand the ethical and philosophical implications of genome editing
4. Develop and be able to defend a position on the issue of genome editing
Terms to Review Before Starting 1. DNA 2. Gene 3. Genome 4. Genotype 5. Phenotype 6. Chromosome 7. Embryo 8. Sex cells 9. Trait
1. Introduction to Topic
3 DC 1/27/2020
This activity is designed for students to start thinking about genetic selection and engineering. Ask students: Is it okay for parents to select their child’s traits? Which traits should parents be allowed to select?
Not all options are able to be selected for using today’s technology, but they may be available in the future.
Characteristic Yes No
2. Definition of New Terms
In vitro fertilization (IVF): IVF is a method of assisted reproduction in which an egg and sperm, retrieved from the biological mother and father, are fertilized in a laboratory dish. (In vitro literally means “in glass.”) Fertilization is the union of a sperm and an egg cell, resulting in the creation of an embryo. The embryo is then created through in vitro fertilization and, depending on successful cell division, is transferred and implanted into a woman’s uterus a few days later. The biological mother carries her child, or a surrogate mother may do so. Usually multiple embryos are created, and sometimes more than one embryo is implanted, which may result in twins, triplets, or more.
Preimplantation genetic screening (PGS): PGS is the screening test that checks the chromosomes of cells from embryos created during IVF, before they are transferred to the uterus. PGS screens only for the number of chromosomes and is used to identify chromosomal abnormalities such as Trisomy 21. It is also possible
DC-9/20/2022
4 DC 1/27/2020
to identify the future baby’s sex, as the sex of a child is determined by the shape of the sex chromosomes (XX for girl or XY for boy) using PGS. In this module, we discuss the ethics of PGS in terms of sex-selection.
Credit: Wessex Reg. Genetics Center
Preimplantation genetic diagnosis (PGD): PGD is a test in which a cell is extracted from an IVF embryo and then tested for specific genetic mutations associated with disease or disability before it is transferred to the uterus. PGD usually takes place when a parent is a carrier of a certain genetic condition and wants to implant an embryo that has not inherited the condition. Very occasionally, parents use PGD to select embryos with a mutation associated with disability. In this module, we discuss PGD in terms of selection against or for genetic mutations associated with disease or disability. It is important to note that PGD is only able to investigate and identify existing genes; it does not alter DNA.
Eugenics: Eugenics is defined as the science of improving a human population by means of structured breeding to increase the occurrence of desirable heritable characteristics. Breeding is controlled, as opposed to uncontrolled, when those with desired traits are encouraged to reproduce with others who have the same desired traits, while those with undesirable traits are discouraged from reproducing, and, in some cases, are sterilized. Eugenics was the root ideology
DC-9/20/2022
5 DC 1/27/2020
that caused many historical atrocities, including the Nazi persecution of Jews and the disabled, who were routinely killed or sterilized. Breeding may also be controlled by selection of some embryos rather than others or by using genome editing.
Genome editing: Genome editing is the use of technology to alter the genome. Alteration can be done via adding, replacing, removing, and splicing DNA bases.
Designer baby: A child whose genome was engineered or edited to express a particular phenotype or eliminate a certain mutation associated with disease or disability.
Germline engineering: The use of genome editing techniques to alter sperm, eggs, or embryos so that the genetic changes become permanently encoded in the sex cells of the resulting offspring and are able to be inherited by future offspring.
Partner Activity: Compare and contrast genome editing/engineering methods: CRISPS, TALEN, and ZFNs.
Genome editing can be achieved with different methods or tools. Three of the most reliable tools are: CRISPR, TALEN, and Zinc Finger Nucleases. These three tools can be used to create the same result, namely, an embryo with (or without) a particular genotype. Have students research these three technologies and compare them.
3. Selecting vs. Designing
To a certain extent, humans have always had some degree of agency over the traits of their offspring by choosing mates with desired phenotypes, like eye color or intelligence, and hope that their child will inherit those traits. However, as we know, this does not ensure that one’s future child will have those desired traits.
When parents use IVF to have a child, they have the opportunity to use PGS or PGD. This provides a level of control over the traits of one’s child that is not
DC-9/20/2022
6 DC 1/27/2020
possible when a child is conceived through intercourse. Since multiple embryos are typically created during one round of IVF, parents are able to choose which among the multiple embryos to implant for pregnancy. For example, at this stage, parents might choose the sex of the child, or might use PGD to determine if any embryos have a genetic disorder such as Huntington’s disease or sickle- cell disease. In theory, parents could also select embryos on the basis of eye color, hair color, or any other genetic trait. Although it is legal in the United States, much debate surrounds sex-selection and overall trait selection. PGS and PGD allow parents to choose which embryos to implant on the basis of certain traits, but currently there is a moratorium on human genome editing in the U.S.
Scientists might, in the near future, use genome editing to delete undesirable genotypes (such as the gene for sickle-cell disease) or introduce genotypes that will give rise to desired traits (such as increased intelligence, height, or perfect pitch). Genome editing brings into focus the potential of germline engineering of designer babies, meaning that parents can design their offspring with certain traits that will then be heritable to their children’s children. Genome engineering goes beyond PGS or PGD because it gives parents the ability to introduce new traits in the embryos created using IVF, rather than merely selecting among embryos.
Using PGS, PGD, or genome editing to select or design one’s offspring will likely result in the destruction of some embryos. For example, if a parent creates five embryos during IVF, but selects to implant only two of the embryos on the basis of sex (two boys, let’s say), the other three embryos may be destroyed, frozen, or donated to science. This module will not explore ethical issues surrounding the moral status of embryos or the use of embryos in research.
4. Ethical Debate
A. Sex Selection: Sex selection refers to choosing offspring on the basis of sex. Some parents prefer to have a girl or boy for various reasons. Parents can select their offspring using PGS or PGD when they use IVF for pregnancy. They may also determine the sex of fetuses in utero, and some choose to abort on the
DC-9/20/2022
7 DC 1/27/2020
basis of sex. Question: Should sex selection at the pre-implantation phase be allowed?
Pro: Avoid sex-selection abortions, infanticide, and child abandonment
• Recent research predicts that the lives of almost 5 million baby girls in India will be lost from 2020 to 2030 due to the prevalent use of sex-selective abortions. Academics at King Abdullah University of Science and Technology in Saudi Arabia estimate the average annual number of “missing female births” will be 469,000 from 2017 to 2025 and 519,00 from 2026 to 2040, resulting in around 6.8 million lives lost. • Abortions that are done correctly, and in a proper facility, are very safe.
However, they can be expensive, and many women, especially in developing countries or in U.S. states that strictly regulate abortion, do not have access to such facilities. Therefore, women often resort to at-home abortions, which can be extremely dangerous.
• Infanticide is the unlawful killing of infants, and female infanticide is the unlawful killing of female infants based solely on their sex. • Infanticide is a result of cultural bias and sex stereotypes, and is especially
prevalent in India and China. Females are considered as inferior in almost all aspects of life, while men are valued for their ability to contribute to the family’s socioeconomic stability, making economic considerations one of the main reasons for female infanticide.
• While sex selection IVF will not stop female infanticide, it will provide families with an alternative to female infanticide, as they can ensure that they will have a boy.
• If sex selection were to be done at the pre-implantation stage, the number of abortions due to sex selection, and the number of deaths due to infanticide or child abandonment, might be greatly reduced.
Pro: Family Balancing
• Family balancing is when a couple undergoes sex selection for the purpose of balancing the representation of boys and girls in a family.
• For example, if a family already has 3 girls, parents may opt to undergo
DC-9/20/2022
8 DC 1/27/2020
IVF and use sex-selection so that they can fulfill their desire to have a boy. • Family balancing is defended on the basis that it is beneficial to a family and can
bring a family much happiness without directly causing harm to anyone or disenfranchising another group.
Pro: Prevention of sex-linked disorders
This argument says that parents should be able to select for a certain sex if there is history of sex-linked disorders in their family history. For example, retinitis pigmentosa affects only males, as it is carried on the Y chromosome. Sex selection via PGS is much simpler and cheaper than using PGD to comb through the DNA to diagnose a certain disorder. Therefore, sex selection allows certain prospective parents to select against disease using PGS at a cheaper cost than if they were to use PGD, making it a more viable option for parents who want to prevent passing on a sex-linked disorder, but who cannot afford PGD.
Pro: Parental Autonomy
Ultimately, sex selection is supported by the conception of parental autonomy. According to the law, parents have the right to bring up their children according
to their own beliefs and ideas, allowing parents to make the majority of decisions concerning their children.
Parents should be allowed to make choices that reflect their values. While this could lead to decisions influenced by sexist beliefs or norms, it is still the choice of the parents and within their right to choose what kind of child to bring into the world.
Con: Promotion of sex selection legitimizes policies that have led to sex- selection abortions, infanticide, and child abandonment
If sex selection at the pre-implantation stage is condoned by the government and becomes normalized, then there will be fewer ethical qualms with sex selection overall. Many women and men in countries all over the world have fought for a very long time against sex-selection; legitimizing it poses a risk that sex-selection
DC-9/20/2022
9 DC 1/27/2020
will be seen as ethically permissible, even at later stages of pregnancy or after birth. People who develop this argument tend to think that the government should ban sex-selection at the pre-implantation stage, to set a precedent that choosing male lives over female lives (or vice versa) is not ethically acceptable, at any stage of pregnancy or family life.
Con: A Slippery Slope
A “slippery slope” argument is a term used for arguments that propose we should ban one practice because it might lead to another, worse, practice. In this context, some are worried that if we allow selecting embryos on the basis of sex, it might lead to the general acceptance of allowing embryo selection on the basis of other traits. Since that’s ethically problematic, it is argued that we should ban sex- selection, too.
Con: Justice concerns
Sex selection via IVF is very expensive, and many families are unable to afford not only IVF, but also PGS and embryo freezing that often comes along with it. Thus, this ability will be available only to wealthier people.
Opportunities and choices for families continue to expand for the elite but remain closed to those who cannot afford to take advantage of those opportunities.
Con: Changes the relationship between parents and children
Parents are expected to love their child no matter what. When parents begin selecting desirable traits, including their child’s sex, it turns their child into a commodity rather than a subject of unconditional love. Those who advance this argument are typically concerned that selecting embryos on the basis of sex opens the door inevitably to the selection of embryos on the basis of other traits. This is seen as an undesirable and immoral practice, and it would lead to irreparable harm to the relationship between parents and their children.
Think Critically: Why might parents want to select the sex of their child? What sorts of cultural beliefs influence whether people want a girl or a boy?
DC-9/20/2022
10 DC 1/27/2020
B. Disability: Selecting for or against a disability is done through either PGS or PGD depending on the type of disease or disability. For example, Trisomy 21 can be detected via PGS, since it is the number of chromosomes that causes the syndrome, while other diseases that are due to mutations of particular genes are detected via PGD. Prospective parents can choose not to implant embryos that have such mutations to avoid having a child with a disease or disability. On the other hand, parents may also choose to implant embryos with particular mutations if they desire to have a child with a particular disability or difference, such as deafness or dwarfism.
Question: Should prospective parents be allowed to select for or against a disability using PGS or PGD?
Pro: Selecting against disability avoids hardship for families
Impact on the family Raising a child with a disability can be a huge economic strain that many
families would not be able to sustain for every single year of the child’s life. Costs include treatment, full time care, and sometimes the need for specialized housing and environments. Selecting against disability is a relatively easy way to avoid these costs, and avoid the hardship brought on by disability.
Disruption to Family Life Having a disabled or sick sibling can be very challenging to able-bodied
siblings. Some parents who choose to use PGD to select against disability cite concern for already existing children. Since disabled or sick children require more care than healthy and able-bodied children, some parents worry that their healthy or able-bodied children would feel neglected.
Pro: Parents ought to give their children the best chance at having a life worth living
• Some argue that parents ought to give their children the best chance at life. Some even argue that parents have a duty to ensure that their offspring have lives free of
DC-9/20/2022
11 DC 1/27/2020
extreme adversity and suffering. If that’s the case, it could be considered immoral to deliberately conceive a child with a disease or disability that would otherwise inhibit a “life worth living.” Ethicist Laura M. Purdy even says that parents have an ethical duty to use PGD to avoid bringing into the world a child with a disease or disability.
• A “life worth living” is challenging to define, but those who advance this argument typically say that a life worth living has the following elements:
• A life free of pain caused by medical disease • Autonomy to live a normal life
Freedom from crippling anxiety regarding the onset of a disease (e.g., years building up to the onset of Huntington’s disease).
Pro: Helpful to families living with disability to have a child with the same disability (such as deafness or dwarfism)
Parents sometimes use PGD to select for genes to make sure that their child has the same disability or disease that they do.
According to a survey performed in 2006, 3% of 190 IVF clinics in America said that they had provided care for parents using PGD to select for embryos with a certain disability.
Many with the disability do not view the “disability” to be crippling, and in fact regard their disability as a strength. Therefore, it is argued that they should be able to select for the trait in their children as it is regarded positively. People in this camp vehemently deny that having a disease or disability makes their life not worth living.
Con: Expressivist Argument
When parents choose not to implant an embryo that has a disability, essentially discarding it, they implicitly degrade and devalue the lives of persons who are disabled saying, “Your life is not worth living.” It expresses the judgment that those who are disabled are less worthy of existence than those without a disability. This contradicts the moral principle that all life is valuable and dignified.
The option to do this promotes a social message that those who are disabled are
DC-9/20/2022
12 DC 1/27/2020
not considered full people, as their lives are being treated as meaningless and as a disease. Thus, allowing genetic selection on the basis of disability is discriminatory toward those who have disabilities, as it is would be seen as okay to discard, and not give a chance to, embryos that present disability.
Con: Problems surrounding disability are caused by society, not by the disability itself
Some argue that impairments due to disability or disease are created by society. A better word for “disability” is “difference.” For example, people in wheelchairs move differently. If our infrastructure were created to better accommodate wheelchairs, persons in wheelchairs would not be “disabled” in the sense that they are unable to get around. We can fix “disability” by making our environments and our societies more accommodating of differences among people in how they get around, how they perceive things, how they learn, and how they work. We don’t need to eliminate disability genetically, we need to eliminate disability by changing our environment. With the right technology, those who are disabled can live to their maximum capacity.
Those who advance this argument conclude that selecting against disability using…